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Apparent NAI ... osteogenesis imperfecta ?????

89 replies

Kaylax88 · 26/12/2017 14:55

Hi please help me and my childs father are currently being accused of child abuse. There's no way I'd ever hurt my children. I think my daughter has osteogenesis imperfecta. Does anyones child have this ?? How can i get tested for it to see if me and her dad are carriers ? I'm losing my mind both my children are in foster care due to this

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Kaylax88 · 26/12/2017 21:32

I'm in uk. I have spoke to brittle bone society they told me get solicitor to refer her to great Ormond street as that's closest. Will be doing that in January once solicitor is back

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Kaylax88 · 26/12/2017 21:33

Sorry to put a downer on everyone's boxing day. I just need opinions and any help

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HateSummer · 26/12/2017 21:34

Doctors are usually experts at spotting NAI’s and child abuse. I’d think hard about who has been left incharge of your child since she’s been born. Osteogenesis imperfecta is quite rare. Does she have a blue tinge in the whites of her eyes?

Kaylax88 · 26/12/2017 21:37

It was the same doctor who said she has shaken baby syndrome. It got proved she hasn't got that but he told everyone she has so I'm seeking a different doctors opinion. It's only me and father. He did every night with her as I was recovering from my c section and he's up until 5am every night anyway. I did all day with the children

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Kaylax88 · 26/12/2017 21:37

She's never had any bruises or marks on her that's what I really don't understand. Surely you'd have a bruise from a broken bone ???? I don't know I'm not a medical professional

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Kaylax88 · 26/12/2017 21:39

She does have a slight blue tinge to the white bits of eyes but not a strong blue it's noticeable in photos and real life but not strong

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youarenotkiddingme · 26/12/2017 21:40

Log everything. Just factual and no emotional information about what you 'think'

Eg. Noticed swelling in thigh x date. Took to a and e at y time.

It'll help your solicitor and also help you remember facts when you are under pressure to answer questions.

Sounds tough and I hope a resolution is found and 2018 is a better year Thanks

Kaylax88 · 26/12/2017 21:42

Yeah good idea I think I'll go library and type a report up. As the situation is so horrible I do forget things until reminded. Like the amount of times I left her dad alone with her I didn't remember when put on the spot until mum reminded me

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user1469751309 · 26/12/2017 21:43

Hi OP I have this condition you need to request a bone density scan as this will highlight the thinning of the bones. Don't go by X-rays alone as just because you have OI does not mean you only get certain fractures. If you need more info please PM me thanks.

user1469751309 · 26/12/2017 21:44

With OI you don't always bruise when you have a fracture I have several at the moment and no bruises. The blue sclera will not be prominent all the time but slightly visible to a trained eye.

Kaylax88 · 26/12/2017 21:45

I've messaged you

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Tedster77 · 26/12/2017 21:46

I’m sorry but I’ve seen some awful results of full skeletal surveys where there’s been no prior swelling or bruising and it’s been NAI.

You sound like you have all you can have in hand - solicitor, follow up at GOSH etc and I know this must be hell but you are going to have to ride it out.

I seem to recall you saying your partner was quite rough with the baby in a previous thread? What has he had to say about all this?

Kaylax88 · 26/12/2017 21:47

He's heavy handed but won't admit it. I've never seen him hurt her tho but it is a possibility that needs to be explored. He's adamant he's not heavy handed but he is and he's going to tell his solicitor when they 're open

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Kaylax88 · 26/12/2017 21:48

See this is why I created this thread. Now you've said you can have fractures without any bruising or swelling. I didn't know this prior

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GetOutOfMYGarden · 26/12/2017 21:52

You need a solicitor. For you, not your husband.

There may be something else they found that suggests NAI which is why they've gone straight down that road.

Kaylax88 · 26/12/2017 21:53

I've got a solicitor for me. I do have a strong case but if I find out he has hurt her and not told me I will be leaving him and he won't ever see her again. Call me a bad mother if you like but in my opinion he won't deserve to see her again if it comes out that he's harmed her

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Kaylax88 · 26/12/2017 21:54

They're going down the nai route due to rib fractures and the growth palette of long bones. The doctor kept saying she had shaken baby syndrome but this has since been ruled out from ct scan and she doesn't have that

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confusedhelpme · 26/12/2017 21:55

What does your OH say about this?

Kaylax88 · 26/12/2017 21:56

He doesn't really say much. I have asked him if he could have done it accidential he says no. Whenever I talk about it I get the "are we really talking about this again" sentence. Which is why I've came on here as I have nobody else to talk to about it

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Sparklesdontshine · 26/12/2017 22:01

How old is your son, have they taken him too? Are they letting you have supervised contact?

Kaylax88 · 26/12/2017 22:03

My sons 13 months and daughter 2 months (very close I know) yes he's in foster care due to her fractures. We have supervised contact 6 hours a week. She's going to forget us soon as she's so young

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imnotalpharius · 26/12/2017 22:04

DXA scans can't be done on babies.

eatsleavesmostly · 26/12/2017 22:07

Have you been asked or been advised anything about living separately from your partner?

furryelephant · 26/12/2017 22:08

Your DP’s avoidance of it would ring alarm bells with me personally Sadin my experience working in hospitals, after initial tests (skeletal survey, bloods, ophthalmology etc) the doctors are usually pretty accurate at determining whether it is an NAI or an underlying condition. However I would definitely do as you’re doing and push for every single test under the sun! Must be absolutely devastating for you without your babies Sad

Kaylax88 · 26/12/2017 22:13

What's a dxa scan ???

Solicitor said not to seperate yet as it could be an underlying medical issue but I think I need to as it's still a possibility he could have done it and I don't feel right waiting until we know for definate

It's horrible not having them wake me up in the morning giving me 5 minutes to get their bottles done or they'll scream murder haha. But seriously I hope it gets sorted soon as this is awful. The doctor who says it's nai is the same doctor who said she had shaken baby syndrome and was proved wrong that's why we've got indpedent specialists to look at the medical record. I've taken her doctors every week due to her excessive crying... if I was abusing my child I wouldn't have taken her doctors/hospital to try and get her help for the crying.

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